Dear Peg, I was diagnosed in Nov. 2004 and started Gleevec in Jan. 05. I dealt with the horrendous side effects of Gleevec until this year, mainly because I was terrified to try either of the new drugs. Unlike some, I did not gain weight, the only swelling I had was the puffy eyes. In fact I lost weight from the horrific diarrhea. It was uncontrollable and I took lomotil. I hate to be so graphic with you but my stomach cramped, and it burned so bad when I had to go to the bathroom which was constant. I could eat 2 or 3 bites of food, and as soon as it hit my stomach, I instantly had to go. The gleevec has literally played havoc with my digestive system. It gave me GERD. It took away my appetite and I've always had a good appetite. I am now on Sprycel and all of that is gone, although I do now have constipation but it is easier to deal with than the diarrhea. The only side effects I have from it are waking up with a headache, they were severe in the beginning (for about 2 weeks) but have slacked off now, but still occasionally wake up with one but not as severe. I would suggest you try the Sprycel first and see how you do before the Tasigna. I was started on a low dose of 50mg just to test the waters so to speak. Maybe you could also start on a low dose. I know what you are going through and I also understand your fears of trying something new. Hope I have been of help. Love,Peace,Hope & Prayers, Patricia
On Aug 12, 4:55 pm, peg <[email protected]> wrote: > Hi everyone, > I am hoping someone has thoughts to share with me. I was dx'd in > February, started Gleevec 400mg and had unbelieveable results. PCRU at > 4 months! However, also severe irritable bowel syndrome by 5 months! > It started as gas, bloating, diarrhea and just got worse the longer I > took Gleevec. Finally, it left me doubled up in pain any time I even > tried to eat. Please understand I am not a lightweight...I am allergic > to pain meds and local anesthetics, have done a root canal with no > anesthetic at all! The IBS was severe. The gastro doc is certain it > is the Gleevec. Immodium didn't relieve the diarrhea any more, nor did > other meds relieve pain. Only pain relief was to not eat at all! > Didn't matter what foods I ate or didn't or what time of day I took > the Gleevec (with food and a full glass of water). Have been off of > Gleevec for a week now and still working on getting bowels back under > control, but thankfully the pain and bloating are gone. They want to > start me on Tasigna next week and I am terrified. I already have a > heart arrhythmia and the Gleevec has already elongated my QT...still > within tolerance, but close. I am scared of dying from long QT, (with > an arrhythmia already, how would I know I was having a problem) and > barring that I am also scared of other side effects I am hearing about > like migraine headaches, high blood sugar, rash....I am the sole > support of four, so stopping work is not an option for me unless I > would also like to stop eating and having a roof over my head! I want > to live, but at what price? Has anyone else had such severe effects > from Gleevec and found a way to improve them?? I really don't want to > change if I don't have to. -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
